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Celiac Disease: Patient Perspective. C. Kupper, RD, CD, Executive Director ( [email protected] ) Gluten Intolerance Group of North America USA) www.gluten.net. Living & Coping with Celiac Disease. 44% found GFD difficult to follow* 2. 84% have problems identifying GF foods*

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celiac disease patient perspective

Celiac Disease: Patient Perspective

C. Kupper, RD, CD, Executive Director ([email protected])

Gluten Intolerance Group of North America USA)

www.gluten.net

living coping with celiac disease
Living & Coping with Celiac Disease
  • 44% found GFD difficult to follow*

2. 84% have problems identifying GF foods*

3.Quality of life negatively impacts§

    • Ability to travel (82%)
    • Ability to eat out (86%)
    • Family life (67%)
    • Work/Career (41%)

*Canadian Celiac Health Survey October 2002 § J Am Diet Assoc 2003, Lee and Newman

gluten reactions
Gluten Reactions
  • 75% feel can differentiate a ‘gluten’ vs. other intolerance reaction
  • Reactions last several hours to days
    • Self-reported 4 hours to 14 days
    • Reactions range from intestinal to extra-intestinal, and classic allergic-type reactions

Online patient survey of 620 persons on a GFD from Celiac List Serve (3/2005)

where celiac disease patients get information and guidance
Primary Sources

Support groups

Internet

List serves, chat groups

Self-help books

Secondary Sources

Doctor

Dietitian

Celiac research facility

Medical websites

Where Celiac Disease PatientsGet Information and Guidance

*Canadian Celiac Health Survey October 2002; Online patient survey (3/2005)

slide5
Do consumers perceive that there are gluten exposure levels below which they are not concerned with health risks?
  • Yes and No
    • Depends on consumer’s confidence and acceptance of research vs. testimonials
    • Consumer inability to correctly interpret research findings
    • Perpetuation of mis-information

Online patient survey of 620 persons on a GFD from Celiac List Serve (3/2005)

varying levels of gluten sensitivity
Varying Levels of Gluten Sensitivity
  • Celiac disease vs. gluten intolerance
  • Perception of gluten ‘poisoning’ vs. other reaction causes
  • Fear Factor of complications from gluten ingestion
define gluten free in usa
Define Gluten Free in USA?
  • No definition – 19%
  • 20 ppm gluten –13%
  • 200 ppm gluten – 5%
  • Zero – 42%
  • Don’t know – 21%

Online patient survey of 620 persons on a GFD from Celiac List Serve (3/2005)

do you trust products labeled gf
71% - Yes

22% - No

7% - Sometimes

25% - Possibly

27% - Yes

45% - No

‘Gluten’ Reaction

from Labeled

GF Food

Do You Trust Products Labeled GF?

Online patient survey of 620 persons on a GFD from Celiac List Serve (3/2005)

the gf consumer
Compulsive about food safety & contamination

Limited trust in labeling & manufacturing practices

Limited understanding of good manufacturing practices

Want company accountability / assurance

May translate information to an extreme

Descriptive labeling not considered beneficial - ‘no gluten ingredients added’

Changes in ingredients can change GF Status – i.e.: food starch

The GF Consumer
consumer comments
Consumer Comments
  • Without effective labeling how can someone who is being damaged by gluten sensitivity/CD, protect themselves? 
  • Even if you call a company they can change their process/ingredients and we never know.
  • If the product appears GF on the label but is not marked GF, I do not trust the product.
  • I get sick eating GF foods…I don’t trust anything not made in a dedicated plant.

St John’s Celiac List Serve (3/2005)

closing thoughts
Closing Thoughts
  • Speak same language - ‘‘Translator’’
    • Consistent Simple Terminology between industry & consumer
      • ppm
      • gluten
  • Education component lacking – consumer and industry
  • Reasonable vs. lowest threshold
    • Consumer safety
    • Manufacturer compliance
bottom line
Bottom Line

Gluten intolerant consumers

want to rely on labeling,

with a high level of confidence,

to make safe food choices

for their health and well-being.

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